Igenex Results/Other results: Please share your analysis of my results with me

thatdudefromkansas Welcome! I'm so glad that you chose to join our community.

I'm not that familiar with the other test but I can help you you with your Igenex results. I used this site to understand mine. http://lymetwistontherocks.blogspot.com/2011/01/western-blots-what-do-all-of-those-darn.html

While Igenex says your test is negative you tested VERY positive for Lyme specific bands. The only way that happens is if you have Lyme in your system. (just in case someone tells you this-there is no such thing as a false positive.

31 outer surface protein A (OspA), specific for Bb
41 flagellin protein of all spirochetes; this is usually the first to appear after a Bb infection

It's common that people who have Lyme are misdiagnosed with MS, ALS, lupus and more.

I don't have the MTHFR mutation but many members here do. Someone will chime in and comment on that. For some reason the board has been unusually quite the last 10 days or so. If you don't receive other response please bump your post back to the top.

If you haven't ​yet​, it would be helpful for you to start with reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!", as it is packed full of important information, symptom lists, helpful links and pdf's, how to detox when one has these infections, information on probiotics and much more.​


For information on finding a​n ILADS ​(International Lyme and Associated Diseases Society)​ trained​ Lyme Literate Medical Doctor(LLMD) in your area, you can send me an email by clicking on my screen name or the small blue envelope under my screen name. I may have contact information for some LLMD's in your area as well.​ ​Please include your state and area that you would like to find a LLMD in and I will see how close I can get to your location.​


You can email the Tick-Borne Disease Alliance at​[​​url]​[email protected]​ for LLMD referrals and you can go to ​tbdalliance.org​​ to learn more about these infections.


You can also go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link:www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74​​

ILADS has their own referral system as well:ilads.org/ilads_media/physician-referral/


​ You will want to find an ILADS trained doctor, as ID Docs (Infectious Disease Doctors) believe Lyme is hard to catch and easy to treat, and don't believe in the reality of chronic Lyme. Go to the ILADS site to read the new (2014) Treatment guidelines to get you started on your healing journey:
http://www.ilads.org/lyme/treatment-guideline.php


Other's will add more.

Janet

If she had Lyme when she was pregnant with you than it's almost certain you got it in uterine.

Lyme can stay dormant for years and than be triggered by a health crisis, surgery, stress etc. There are many members on here who realized years later that they had Lyme most of their lives and without knowing it passed it on to their children.

You might want to either start a new thread with a title something along the line of Adult who may have been born with Lyme,help from others. Or scroll through the last 4 or so pages and look at the posts about how to treat kids. Those are mostly from parents who passed it on. If you post in one of those threads you'll get assistance. This is a very helpful group.

You also have an indeterminate 39 band, which is a Lyme specific band. Indeterminate does not mean negative, it means there is something there.

So you have babesia. Also, can you give the numbers for this? Your info is not enough
"-chlamydia pn = titer not high enough for active infection"

Just because the lab said that doesn't mean it's true.

Also, which MTHFR mutation? There is more than one.

I'm sorry to tell you this but, it seems like you're dealing with several infections. It would be best for you to see a LLMD to sort through it all. Truly, the testing for all the infections leaves much to be desired.

Certain MTHFR issues can make detoxing challenging. I'm hetero for C677T and have to take the methylated form of B vitamins.

For more information on MTHFR issues please click here:

mthfr.net/

Yes, solu-medrol is a cortico-steroid generally used to reduce inflammation.
Which, in my case, was for the suspected MS lesions from a flare up.

However, I had what could be considered a paradoxical reaction to the solu-medrol.  Neurologists and docs all said my reaction is opposite of what they normally experience with patients.  But was generally just shrugged off as a "huh...." kind of thing.

I did initially see an LLMD at the behest of a family member, and a follow up with these results. 

He has prescribed a treatment regimen for the babesia but was on the fence about the borrelia.

From what I have read, Igenex changed their criteria for a positive result.  Previously, the 31/41 combo would be positive, and the 39/41 I have would be indeterminate because of that one band.

Now, the 31/41 is not considered positive.

Although, they havent' changed the listed criteria on their website, just on the print outs with the results.

If this were to be a very long term, chronic infection, are those results something that would be expected to be seen.  Only a few bands, possibly even a low positive?

I think the presence of the other issues: babesia and the pneumoniae infections would raise the index of suspicion for the presence of lyme as well, especially with how the igenex labs came back, showing SOME activity.

Wants to treat that now, so could be that he wants to eliminate everything else first.

Hi Neighbor - well almost!! I'm in Arkansas.
I'm so glad you chose to join our community!! I can see that you have been give a lot of really great information, but it doesn't seem that anyone has answered your question about the steroids, although I could have easily missed it.

Yes, it will affect your results, as it lowers the immune response - which is needed for these tests. Lyme inhibits the immune system on it's own, so by taking steroids for the inflammation (likely caused by these infections), your immune system is really struggling to continue to fight the infections, and is likely why you didn't have more bands showing positive.

The other thing is that many Lyme patients (including myself) have had that "opposite reaction" to steroids. It increased my pain by quite a bit!

Your doctor shouldn't be going by what's showing up on a test, they should be treating according to symptoms as the infection showing the strongest symptoms is the one that is creating the highest bacterial load. So do be sure to help them with that! Go through symptom lists if you need help understanding what symptoms to share with them (basically any and all!), so that they can treat you accordingly - as many have found out, treating an infection that's not on top sometimes does little to help us feel better.

We frequently have members here who were diagnosed with MS or ALS that turned out to be Lyme all along.

Well, think of it this way - which one offers you a chance at getting your life back? Lyme is known to mimic MS (as well as over 300 other conditions, many of which are very serious), not the other way around. Lyme treatment could reserve much of what you deal with, and with your Mom very likely having had Lyme while she was pregnant with you, all leads are pointing to a Lyme infection. If Lyme treatments don't work, you could always go back to the MS treatments.

These articles says it better than I could: drsusanmarra.com/patient-resources/ms-vs-lyme-disease/


lymemd.blogspot.com/2009/01/doctor-do-i-have-lyme-or-ms.html


And this page is full of information:
www.lymeinfo.net/multiplesclerosis.html

What kind of antibiotics has everyone had success with? And what duration?

Any complete resolution of symptoms?

I am on the fence about the borrelia infection, I'm just not sure about the results.

You had ++ bands even though you were on steroids. Steroids supress our immune system. When you add in the many ways Lyme has of hiding from our immune system it's very telling at least to me that you do have Lyme and that you have had it your whole life. I understand having a hard time accepting a diagnosis when you have already accepted a different one.

http://www.holtorfmed.com/lyme-disease-evade-immune-system/ I've never read this article before looking for a concise way of showing you how well Lyme hides.

Imo the reason you haven't gotten any responses on what kind of abx's we are on and for what duration is that the combinations are all hugely varied and so are the duration's. There are members who are in remission and have stayed on here to help others. Keep in mind it's not a curable disease by definition. When you are no longer sympathetic you stop treatment but you stay on some herbs even if you were on abx's to keep your body protected from them reproducing. If you have a flare up you treat ASAP and it's resolved quickly.

The first abx's I was on was Zithromax and Tindamax. Pulsing the Tindamax 3 weeks on and 3 weeks off. That's a long pulse by most standards. Tindamax is a cyst buster. I'm never on a protocol for longer than 12 weeks. We may do that protocol again in the future but I'm switched up so my body doesn't become resistant.